Science asks authors to retract XMRV/CFS paper

I wonder if the Science call for retraction was a committee decision with some people not wanting retraction and others demanding it, resulting in a call for a "voluntary" retraction. Agree that is is just a really odd move in general without obvious evidence of fraud or intentional misleading.

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Scientists, all scientists, get things wrong, in fact it's probably the case that science advances 99% by error and 1% getting things right. There's no shame in being 'scientifically wrong' because the system is designed to expose the error and progress is made. Of course everyone likes to be 'right' before their work goes public - it's what the various process of review are supposed to ensure, but that can't be fool/full proof and every researcher has to accept that their published worked will be questioned and may ultimately be shown to be erroneous. In most cases a work containing errors simply sits in the archives of research and is unreferenced by subsequent authors, occasionally however a work is seen to be so misleading, its errors so egregious that the authors publicly acknowledge the failing of the work by formally ''withdrawing' it - temorarily embrarrassing but honest, and demonstrating approapriate humility having led ones peers down valueless rabbit hole. The editors of Science gave Lombardi et al forenotice that their 2009 paper was looking unsound; the editors were not saying "we think you are frauds", they were merely giving Lombardi et al the opportunity to 'reconsider their position'. Lombardi et al chose to defend their original work and their peers will make judgements accordingly.

As it so happens, I have recently been informed that this is indeed the case, to some extent at least, so feel free to be surprised, but I'm afraid I don't think I can say any more about that subject now.

Anyway, as far as the WPI are concerned, they have not been receiving any major grant funding in the last couple of years, they are a charitably-funded institute set up by the family of an ME/CFS patient, and their interest is in studying and solving neuro-immune disease. If you take a look at them, it just seems to me a laughable idea that they are making big bucks out of all this. I'm pretty confident that they aren't as well paid as many of the peers in their field, and they certainly aren't as secure in their careers - they are sticking their necks way out, and everything I see tells me that they are doing this in the interests of patients, not in the interests of financial gain.

Of course, financial interests are there for all the players, but it's always interesting to me that the far more substantial financial interests of those working for state-funded organisations, and those well entrenched in the academic world, appear to receive far less scrutiny in these matters than the considerably poorer organisations like the WPI - I guess it's just a prejudice based on the fact that they're an independent institute and thus apparently 'private medicine', but when you look closer at it, this assessment of the relative financial interests seems like a nonsense to me. The idea that all the many doctors and researchers who are extremely highly paid to work in the public sector, in very secure jobs, are doing so out of altruism because they work in the state rather than the private sector, and therefore they're making some kind of noble (but highly lucrative) sacrifice...that sort of thinking is a pervasive myth IMO, because in reality many of the private physicians and independent researchers involved in ME/CFS are going way out on a limb for us when they have far more attractive career paths open to them. And as we know, without such people we would have absolutely nothing going on for us.

If you could cite any XMRV study that was funded out of an ME/CFS pot, or any ME/CFS research budget that has had money allocated from it to the study of XMRV, then you might begin to have a point. I'm not aware of any such example though, unless you count the WPI's own donated money.

As regards how it affects future research if something like XMRV fails to pan out, then I'm inclined to think that we really don't have very much to lose. It may be theoretically possible for ME/CFS research funding to get lower, but not by much. Again: the problem with research interest and research funding that you describe is the existing status quo before the arrival of the WPI, and it's hard to imagine that situation getting any worse. (That's the nice thing about this whole financial crisis: it doesn't seem to have touched us at all, because we don't have anything to cut in the first place - except for a load of money wasted on psychs, which would probably raise the biggest cheer of any budget cut going if it was all taken away).

I do of course think it's a great, great shame (to put it very mildly) that some of the other excellent ME/CFS research doesn't get more attention, more press coverage, and more funding. I just don't think the WPI can be held responsible for that situation, and if they weren't here and XMRV hadn't happened, I don't think the situation for that other research would be any better for it. In fact, if you look at some of the people who have got involved in the ME/CFS research field in the last couple of years, the opposite seems to be the case. So how XMRV will affect ME/CFS research funding in the medium term remains to be seen...

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All you are really saying is that WPI tapped an untapped market for charity funding that wasn't leveraged before. Funding is funding, I'm not really distinguishing between government or grant funding and charity funding. Like I said, it's all a finite resource. If WPI tapped it, someone else theoretically could have, only they didn't. Apparently a "big breakthrough" event like XMRV was required to get people on board. But that doesn't mean WPI is not taking away money that could have been going to another project, if only that hypothetical project had been brought to public or research attention like XMRV.

So we'll just have to wait and see how it pans out. The weight of the evidence appears now (to me, at least) to be solidly against XMRV as a causative factor - as it has appeared to me for some time - and with supposedly such a high prevalence of XMRV in those with ME/CFS and relatively low level in the normal population, no one has yet explained why the higher than normal incidence in prostate cancer has not translated to a higher than normal incidence of ME/CFS in people with XMRV prostate cancer. Something fishy very definitely doesn't add up there.

But I'm perfectly content to wait and see. What should we say, about a year? Today is June 1. I'm setting my calendar alarm for June 1, 2012. We should know by then, or at least have a much clearer indication, whether XMRV has panned out, or has continued to flop. Until then, b/c of events some of us are familiar with, it's better if I have nothing more to say on the topic here.

I know it's difficult for many to hear that something they have invested themselves in emotionally and perhaps even financially might not actually have any merit - I fully empathize with that, believe me - have been there many times only to see hopes dashed - so I'm sorry if my comments are upsetting anyone. That is not my intention at all, only to provide another perspective to the discussion, one that granted appears to be heavily in the minority, but still imo deserves to be said. So see you next yr (god willing we're all still here), and maybe by then my comments won't seem so upsetting, but will be able to be perceived as they were intended, and in a slightly different light. ;-)

I have a feeling she knew about the Coffin and Levy study, as people reported from the InvestME conference that she was telling people to be prepared for further negative studies but despite this, she remained very confident.

Coffins et al study will be shelved away with McLure and Singhs to be remembered as good examples of studies that failed but strived so very hard to be given prominence using over reaching remarks and by employing the same strategy used by the WPI (the media) for which the critics single them out time and again, for a beating.

A new zero-zero study does not impress me. NONE of them explain the control data. It is evidence SOMETHING is wrong, but it does not conclusively show what is wrong - is it WPI, is it the PCR testing, are both wrong and something mysterious is going on? These are just speculations. It does mean there is a mystery that science has to unravel if we are to progress, but it does not tell us what the answer will be - no matter what answer anyone favours, including me, it is just informed opinion, not scientific fact. Scientific mysteries like this just beg for further research, both pro- and anti-hypothesis. This is not something we want to close down until it has been nailed down, superglued, cast in concrete and used to make a monument. It is not over till the science is done.

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I agree Alex. Its not over till the science is done and if they push a fat lady forward, I and I am sure a growing number of the ME and CFS community, will rugby tackle her to the ground.

Some people posting seem too confident that XMRV is going to work out for CFS, given the publicly available data. I know those most supportive of XMRV will be posting the most in these threads, but I think we all need to acknowledge that things are not looking good for XMRV, and that there are lots of legitimate reasons for now thinking the WPI's science paper was flawed.

There are rumours of coming positive papers, but there have been rumours of replication for over two years now. The closest we got was Alter & Lo's, which wasn't the result we expected, even if it was supportive.

I hope I'm wrong, and WPI's work will prove to be a really fruitful avenue of research for us (we really need one!) but I think we need to be preparing for news that it's not. It's still not over (it's taken so long!!!! - we could have sent blinded samples to the WPI two years ago!) but I don't think anyone should stay too emotionally invested in XMRV as more and more negative studies pile up. Hope can feel great, but it can be a bit addictive, and make it hard to let go of things (I expect we've all had experiences in the past of mistakenly thinking we'd found the cause of our illness, or a treatment).

My strong feeling is that Science and the rest of them know the WPIs science is sound and are afraid of the WPI.

This is the only conclusion that can be drawn from the underhand tactics and innuendo about contamination that are constantly cited.

If the WPIs science were genuinely poor, we would see a proper discussion, a fairer contest, not a disgusting and improper attempt to silence the Lombardi paper in this abrupt way.-

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I think that people are coming to believe that contamination with XMRV is far more of a problem than they had realised, with this affecting all the work on XMRV, CFS and PC.

It's not that the WPI's initial paper was poor, it's that they were working on assumptions about XMRV as a pathogen from PC which now seem less clear cut. At the forefront of science, mistakes are often going to be made.

Maybe it will turn out the work indicating contamination is wrong... but when the WPI first published in science, scientists weren't aware of how serious a potential problem this could be. Assumptions from that time are now being questioned in a way that throws all XMRV research in to question.

All you are really saying is that WPI tapped an untapped market for charity funding that wasn't leveraged before. Funding is funding, I'm not really distinguishing between government or grant funding and charity funding. Like I said, it's all a finite resource. If WPI tapped it, someone else theoretically could have, only they didn't. Apparently a "big breakthrough" event like XMRV was required to get people on board. But that doesn't mean WPI is not taking away money that could have been going to another project, if only that hypothetical project had been brought to public or research attention like XMRV.

So we'll just have to wait and see how it pans out. The weight of the evidence appears now (to me, at least) to be solidly against XMRV as a causative factor - as it has appeared to me for some time - and with supposedly such a high prevalence of XMRV in those with ME/CFS and relatively low level in the normal population, no one has yet explained why the higher than normal incidence in prostate cancer has not translated to a higher than normal incidence of ME/CFS in people with XMRV prostate cancer. Something fishy very definitely doesn't add up there.

But I'm perfectly content to wait and see. What should we say, about a year? Today is June 1. I'm setting my calendar alarm for June 1, 2012. We should know by then, or at least have a much clearer indication, whether XMRV has panned out, or has continued to flop. Until then, b/c of events some of us are familiar with, it's better if I have nothing more to say on the topic here.

I know it's difficult for many to hear that something they have invested themselves in emotionally and perhaps even financially might not actually have any merit - I fully empathize with that, believe me - have been there many times only to see hopes dashed - so I'm sorry if my comments are upsetting anyone. That is not my intention at all, only to provide another perspective to the discussion, one that granted appears to be heavily in the minority, but still imo deserves to be said. So see you next yr (god willing we're all still here), and maybe by then my comments won't seem so upsetting, but will be able to be perceived as they were intended, and in a slightly different light. ;-)

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Whether you "believe" in XMRV is almost irrelevant. For better or worse our star is attached to XMRV research at this point. Should this come to an end the most likely result will be the psychs jumping in and running amuck. The dark years of CFS research will look like a picnic. While there is some outside light shining on ME/CFS research we should do everything possible to make changes such as forcing a definition change and legitimate cohort selection.

Some people posting seem too confident that XMRV is going to work out for CFS, given the publicly available data. I know those most supportive of XMRV will be posting the most in these threads, but I think we all need to acknowledge that things are not looking good for XMRV, and that there are lots of legitimate reasons for now thinking the WPI's science paper was flawed.

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The problem with this is that we have the other side doing exactly the same thing. They have been doing so for over a year. They push their conclusions with great intensity through the media, try to influence journals, conferences, probably the employers of the authors of positive studies and so on. If our side was to act as you suggest, we would just simply be brushed aside, shut down and game over. And the truth, whatever it is, would never come out or only much later, who knows when. In such a situation you need to resist and push back, in my opinion.

There are rumours of coming positive papers, but there have been rumours of replication for over two years now. The closest we got was Alter & Lo's, which wasn't the result we expected, even if it was supportive.

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There are other labs, of the highest quality, that have also found XMRV. There's not only the Lo lab. Why do people always omit this? This does not mean XMRV is proven, but it means it's far from over.

I think that people are coming to believe that contamination with XMRV is far more of a problem than they had realised, with this affecting all the work on XMRV, CFS and PC.

It's not that the WPI's initial paper was poor, it's that they were working on assumptions about XMRV as a pathogen from PC which now seem less clear cut. At the forefront of science, mistakes are often going to be made.

Maybe it will turn out the work indicating contamination is wrong... but when the WPI first published in science, scientists weren't aware of how serious a potential problem this could be. Assumptions from that time are now being questioned in a way that throws all XMRV research in to question.

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They have been researching MLVs for decades, i guess. How could they not have been aware of the risks of contamination? The previous research with MLVs should have faced exactly the same problems, shouldn't it?

Whether you "believe" in XMRV is almost irrelevant. For better or worse our star is attached to XMRV research at this point. Should this come to an end the most likely result will be the psychs jumping in and running amuck. The dark years of CFS research will look like a picnic. While there is some outside light shining on ME/CFS research we should do everything possible to make changes such as forcing a definition change and legitimate cohort selection.

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I really don't think that need be the case.

If lots (probably only needs a fifty active on-line posters tbh) of CFS patients go the conspiracy theory route, and refuse to accept more definitive evidence of no association between CFS and XMRV, then I think that this will be used against us in the media and privately amongst patients.

As it is, the XMRV story has just reminded people how many ill patients there are with no known cause of their illness. Some people will try to assume we're all psychologically disturbed in some way, but most of the researchers I've read have seemed sympathetic, and to instinctively understand the moral danger of assuming psychological illness just because a physical cause has not yet been found.

The problem with this is that we have the other side doing exactly the same thing. They have been doing so for over a year. They push their conclusions with great intensity through the media, try to influence journals, conferences, probably the employers of the authors of positive studies and so on. If our side was to act as you suggest, we would just simply be brushed aside, shut down and game over. And the truth, whatever it is, would never come out or only much later, who knows when. In such a situation you need to resist and push back, in my opinion.

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I think that the exaggerated claims of certainty from the 'other side' were helpful for us amongst intelligent opinion formers who were following this story. I certainly don't think we should follow their approach, even as we criticise it. It's likely to backfire horribly, especially as we're patients, not part of the science in-group.

There are other labs, of the highest quality, that have also found XMRV. There's not only the Lo lab. Why do people always omit this? This does not mean XMRV is proven, but it means it's far from over.

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You mean as part of the Science paper? Yeah - that was definitely supportive... but no-one can claim the Science paper replicated the science paper.

They have been researching MLVs for decades, i guess. How could they not have been aware of the risks of contamination? The previous research with MLVs should have faced exactly the same problems, shouldn't it?

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From what I've read, following this story, is that lots of scientists have been surprised by how much of a problem contamination can be with XMRV, and the techniques they're using to find it. Finding it in lab materials, etc. They got the WPI to be careful about the danger of contamination for their first paper, and there were lots of reasons to think that their results were accurate and not the result of contamination... but it could be that was based upon false assumptions.

Whether you "believe" in XMRV is almost irrelevant. For better or worse our star is attached to XMRV research at this point. Should this come to an end the most likely result will be the psychs jumping in and running amuck. The dark years of CFS research will look like a picnic. While there is some outside light shining on ME/CFS research we should do everything possible to make changes such as forcing a definition change and legitimate cohort selection.

I don't think it's necessary to make theories about conspiracies and agree it's better to stick to the facts. What is out in the open and visible is enough. There are different groups, each fighting for their conclusions. Dr. Alter talked about this at the NIH ME/CFS Workshop. Dr. Montoya mentions it in his video. It should not be the side with the better connections, more influence, more resources or whatever that wins, but the truth. Today the NIH website posted a message that the XMRV findings are explained by contamination. I guess Ruscetti would not agree (at least i hope) and he works there as well. But the other camp seems to have more influence. Do we want them to take control of the situation and marginalize and suffocate the other group?

If lots (probably only needs a fifty active on-line posters tbh) of CFS patients go the conspiracy theory route, and refuse to accept more definitive evidence of no association between CFS and XMRV, then I think that this will be used against us in the media and privately amongst patients.

As it is, the XMRV story has just reminded people how many ill patients there are with no known cause of their illness. Some people will try to assume we're all psychologically disturbed in some way, but most of the researchers I've read have seemed sympathetic, and to instinctively understand the moral danger of assuming psychological illness just because a physical cause has not yet been found.

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Do you really think that Coffin, Stoye, McClure, Singh et al will be actively pursuing the "real" cause of ME/CFS after XMRV? I put that chance at 0.00000001%. Yes, there might be a few who will think wow it sucks to be them but then will quickly forget about it as they return to their previous research. It's highly likely that should XMRV research come to end that it will be labeled as "fraudulent" or something else derogatory. Like it or not the patients will by and large also be viewed in that same way.

I think that the exaggerated claims of certainty from the 'other side' were helpful for us amongst intelligent opinion formers who were following this story. I certainly don't think we should follow their approach, even as we criticise it. It's likely to backfire horribly, especially as we're patients, not part of the science in-group.

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It's helpful if doctors, other scientists and the public were bombarded with this crap? They believe it. It's about as helpful as drinking poison. Everything can backfire, but is it better to do nothing and take the risk that the research that could save us is stopped?

You mean as part of the Science paper? Yeah - that was definitely supportive... but no-one can claim the Science paper replicated the science paper.

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No, i'm talking about IrsiCaixa and other labs finding XMRV. One is Maureen Hanson's and there's another one. The one's from the paper can of course not replicate the paper, but nevertheless they are additional labs that have found the virus.

From what I've read, following this story, is that lots of scientists have been surprised by how much of a problem contamination can be with XMRV, and the techniques they're using to find it. Finding it in lab materials, etc. They got the WPI to be careful about the danger of contamination for their first paper, and there were lots of reasons to think that their results were accurate and not the result of contamination... but it could be that was based upon false assumptions.

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Maybe they are now even more aware of it, but it's not possible that after decades of working with similar viruses as XMRV the scientific community was not aware of those mechanisms?

If lots (probably only needs a fifty active on-line posters tbh) of CFS patients go the conspiracy theory route, and refuse to accept more definitive evidence of no association between CFS and XMRV, then I think that this will be used against us in the media and privately amongst patients.

As it is, the XMRV story has just reminded people how many ill patients there are with no known cause of their illness. Some people will try to assume we're all psychologically disturbed in some way, but most of the researchers I've read have seemed sympathetic, and to instinctively understand the moral danger of assuming psychological illness just because a physical cause has not yet been found.

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I've not seen evidence of that Esther! sadly I have seen evidence of the contrary. Why- the PACE trial immediately springs to mind! Where are those sympathetic, sensible doctors who "instinctively understand the moral danger of assuming psychological illness just because a physical cause has not yet been found" and are prepared to publicly make a full and frank criticism of PACE? Nowhere. Where, for that matter, are the doctors saying that the cohort issue is important in XMRV, whatever the state of the search for XMRV? I cannot see them! Meanwhile - CBT/GET is being touted as SAFE for people it can kill or render permanently damaged. People are passed to CFS clinics where psychogenic explanations are the only they'll get, and CBT/GET is all they are offered: CBT/GET being based on psychogenic explanations for the illnesses, without any objection from these sympathetic researchers (let alone clinicians.)

If you have evidence for 'most of the researchers' I'd love to see it. It might be your reading has been limited (no offence intended here).

I don't think it's necessary to make theories about conspiracies and agree it's better to stick to the facts. What is out in the open and visible is enough. There are different groups, each fighting for their conclusions. Dr. Alter talked about this at the NIH ME/CFS Workshop. Dr. Montoya mentions it in his video. It should not be the side with the better connections, more influence, more resources or whatever that wins, but the truth. Today the NIH website posted a message that the XMRV findings are explained by contamination. I guess Ruscetti would not agree (at least i hope) and he works there as well. But the other camp seems to have more influence. Do we want them to take control of the situation and marginalize and suffocate the other group?

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You're always going to get different sides of a contentious issue trying to put across their beliefs. It probably is now the majority view that XMRV is not related to CFS or PC, but that positive studies were the result of contamination. I don't think that politics is going to lead to a real link between XMRV in CFS or PC being missed. The Lipkin study sounds super thorough. The BWG are working with the WPI. I know that we've had to put up with a lot of bad science with CFS, and dishonest doctors and researchers... but virology is less prone to those sorts of distortions than the more social science side of research CFS often gets stuck with. They know what they're looking for with XMRV, and I'm confident that a study like Lipkins will be able to confirm if there's any reason to think it's there or not.

Do you really think that Coffin, Stoye, McClure, Singh et al will be actively pursuing the "real" cause of ME/CFS after XMRV? I put that chance at 0.00000001%. Yes, there might be a few who will think wow it sucks to be them but then will quickly forget about it as they return to their previous research. It's highly likely that should XMRV research come to end that it will be labeled as "fraudulent" or something else derogatory. Like it or not the patients will by and large also be viewed in that same way.

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good points re PACE and then...
If you have evidence for 'most of the researchers' I'd love to see it. It might be your reading has been limited (no offence intended here).

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I probably was too hopeful there. And I was talking about those I've read whose interest is science and virology, not medicine or CFS. They often seem to take a more sceptical view of research like PACE anyway (although I certainly agree with Angela that the lack of serious criticism of PACE shows how one-sided many's scepticism is)... with more general criticism of epidemiology and the way statistics can be manipulated to show whatever the researchers involved want. I get the impression that many scientists view work like PACE as unworthy of criticism, while the XMRV science paper made very solid and substantial claims which can be shown to be true or false, so it attracts much more attention.

Whether you "believe" in XMRV is almost irrelevant. For better or worse our star is attached to XMRV research at this point. Should this come to an end the most likely result will be the psychs jumping in and running amuck. The dark years of CFS research will look like a picnic.

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Way too dark in my opinion Floydguy.. Lipkin and Montoya are doing a definitive pathogen study. If that turns out positve - that will have a huge impact on the field. Most of the negative papers - from Levy to Singh have made a point to argue for more research into ME/CFS.

The Lights are doing fantastic research, Broderick just got a 4 1/2 million dollar grant, Klimas is getting positive cytokine results and we just has a SOK conference that was ALL pathophysiological.....If XMRV goes down it is not going to knock that stuff off the map...

It should not be the side with the better connections, more influence, more resources or whatever that wins, but the truth. Today the NIH website posted a message that the XMRV findings are explained by contamination. I guess Ruscetti would not agree (at least i hope) and he works there as well. But the other camp seems to have more influence. Do we want them to take control of the situation and marginalize and suffocate the other group?

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This, combined with Mangan's indicating at CFSAC that NIH ME funding will not increase and the failure to request use of CCC in their latest invitation for grant applications, shows me NIH hasn't changed at the core re ME. NIH SoK was incredibly good window dressing for us, but compared to these core problems, still window dressing. We've got to fight back.

I've not seen evidence of that Esther! sadly I have seen evidence of the contrary. Why- the PACE trial immediately springs to mind! Where are those sympathetic, sensible doctors who "instinctively understand the moral danger of assuming psychological illness just because a physical cause has not yet been found" and are prepared to publicly make a full and frank criticism of PACE? Nowhere. Where, for that matter, are the doctors saying that the cohort issue is important in XMRV, whatever the state of the search for XMRV? I cannot see them! Meanwhile - CBT/GET is being touted as SAFE for people it can kill or render permanently damaged. People are passed to CFS clinics where psychogenic explanations are the only they'll get, and CBT/GET is all they are offered: CBT/GET being based on psychogenic explanations for the illnesses, without any objection from these sympathetic researchers (let alone clinicians.)

If you have evidence for 'most of the researchers' I'd love to see it. It might be your reading has been limited (no offence intended here).